Post No.: 0233
Most of us avoid it but we need to talk about death, and do so while we’re still in full control of our mental faculties, because it’s the one thing that’s inevitable for all of us. The earlier we do so, the earlier we’ll investigate our future options, get better informed about them and therefore make better decisions. It’s not just about sorting out our donor choices, wills and maybe power of attorney affairs, but expressing our other wishes to our own family, such as care options, funeral options, dying at home surrounded with family rather than in a hospital if possible, and our attitudes to if we ever enter into a vegetative state with little chance of recovery. There aren’t right or wrong choices but it gives us a chance to make our own choices whilst we can express them.
Death and these related issues are incredibly difficult things to think about and discuss with others but they get more difficult if we, for instance, end up with limited cognitive functionality after a sudden accident, and it becomes impossible if we suddenly fall into a coma or pass away. It’s for one’s own family’s sake as well as for one’s own sake (e.g. organising financial matters if one spouse/partner dies before the other).
Most people worry about pain and the quality of one’s life at the end of one’s life, but things like one’s legacy or biography matter greatly too, such as closures of matters before one dies and giving a proper goodbye. Now when most people think about hospices and palliative care, most people think of death and dying – but palliative care is really about managing symptoms and living the rest of one’s days (however long this may be, which could be years) to the fullest one can, rather than possibly dying a ‘death from a thousand cuts’ due to being subjected to rounds and rounds of harsh and expensive treatments that aren’t likely to work, will cause a lot of pain and potential negative side-effects or complications themselves (e.g. cancer treatments typically attack healthy as well as unhealthy cells); along with the corresponding draining recovery periods required as a result, just to die anyway. Doctors could try this thing or that thing to try to cure or treat a patient – but just because one can, it doesn’t mean one should.
When there is no realistic cure for one’s disease or condition, it’s arguably better to live the rest of one’s life to the fullest than be given unrealistic hopes and extra suffering. Of course, no one has prescience to know whether to twist or fold in such situations so there is no right or wrong answer. We won’t have the benefit of hindsight until after a choice is made.
One may be presented with statistics of what happened to other similar patients – whether their decisions to carry on taking ever more experimental treatments worked or left their quality of life in an even worse state – but one might indeed beat the odds? So it’s about having and expressing this personal choice. A treatment with a 5% chance of working might still be worth it to some people, and you’ll be able to find people who did take such a chance and it worked for them. But of course you won’t be able to hear from the 19 out of 20 people who took the above chance and it didn’t work for them and they died in severe and prolonged pain in hospital – because we logically cannot interview dead people to get their point of view on their decisions. Accepting totally new experimental treatments might provide data for the scientific research on them though, which might help others in the future? So once more, there is no clear right or wrong answer.
Palliative care is for people with chronic, life-limiting illnesses to help them manage their pain and to get the most of their quality of life. A decent model looks at holistic care (physical, psycho-social, spiritual), and integrates a ‘whole person’ care with a focus on the family unit i.e. the patient plus everyone involved with caring for them. So good palliative care maximises the quality of the remaining time of one’s life. Some research even shows that the early application of palliative care can, in some cases, increase the quantity of the remaining time of one’s life too. Reasons for this may be individual – perhaps from not having to be subjected to additional physical stresses from aggressive treatments that wouldn’t have ultimately worked, to the psychological peace of acceptance itself and regaining control of the narrative of one’s end of life, that improves well-being and therefore longevity?
Death is, again, a very tough subject to think and talk about, whether concerning oneself or a loved one. But talking frankly about it is something that is overall good to be done sometime or another. And since most people don’t know for sure when they’re going to pass away, it’s a risk to keep postponing it in the hope we’ll reach (very) old age or suffer from a kind of terminal illness that’ll give us the time to think about and discuss it without being rushed and in a way that isn’t too immediately and overwhelmingly emotional. Having the conversation early doesn’t mean one’s mind cannot change later to have one’s wishes updated (including legally) but if it becomes too late then the guesses that’ll then need to be made on your behalf might be burdensome for your family during a very tough time.
And once it’s done, you can relax and get on with your life!